MiaVIL
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MiaVIL

Member, Female, from Underworld

I have very little hearing past 6k Jul 24, 2024 at 9:01 PM

    1. MiaVIL
      MiaVIL
      I have very little hearing past 6k
    2. MiaVIL
      MiaVIL
      @RunningMan did the data from Susan Shore trial show that the less manoeuvres someone had the greater the reduction in the TFI?
      1. RunningMan
        RunningMan
        That's what the chart (from the study supplemental documentation) shows, which doesn't rally make sense to me. Maybe it's an error in the chart. I would expect the opposite.
        Jul 22, 2024 at 11:02 PM
      2. MiaVIL
        MiaVIL
        @RunningMan I don’t have any manoeuvres at all so I am hoping the ME implant works for me. I would try Susan Shore but worried it may not work.
        Jul 23, 2024 at 12:49 AM
    3. MiaVIL
      MiaVIL
      My back molar on the right side is completely chipped off and the right ear is my worse ear.
    4. MiaVIL
      MiaVIL
      I would donate and could raise money for things like ME implants to move faster… I don’t want things abandoned
    5. MiaVIL
      MiaVIL
      The world would be a better place without me in it.
      1. _Shoto_ likes this.
      2. cullenbohannon
        cullenbohannon
        Thats not true. Hang in there.
        Jul 19, 2024
        tpj and _Shoto_ like this.
      3. Juliane
        Juliane
        No it won't. Hang on.
        Jul 19, 2024
        tpj and _Shoto_ like this.
      4. MiaVIL
        MiaVIL
        I told some people in my dream that I couldn’t do it anymore. I am on my last thread.
        Jul 19, 2024
    6. MiaVIL
      MiaVIL
      I think middle ear implants/electrical stimulation are the way forward.
      1. _Shoto_ likes this.
    7. MiaVIL
      MiaVIL
      I just want to end it all
      1. BB23 likes this.
    8. MiaVIL
      MiaVIL
      chirping tinnitus is awful
      1. Varda
        Varda
        At least with constant tones they can kind of fade into the background but the chirps are so distracting and attention grabbing.
        Jul 7, 2024
        SilverFox likes this.
      2. Pinhead
        Pinhead
        This is really it. It takes over your entire consciousness. No one seems to understand that. I can no longer think coherently because my brain is chirping and it has decided chirping is more important than conscious awareness. I'm already dead.
        Jul 20, 2024
    9. MiaVIL
      MiaVIL
      @ploughna have you had a consult with Dr Djalilian’s migraine protocol?
      1. ploughna
        ploughna
        yes, but not signed up yet. In the middle of a job change & relocation, so waiting until my situation is a bit more stable before starting anything like this
        Jul 9, 2024
    10. MiaVIL
      MiaVIL
      We had a lot of fun, proud of what you accomplished and ur strength. U were spunky and beautiful. I loved everything that made you, you.
      1. BB23
        BB23
        I have been dealing with lots of issues. if tinnitus is the only issue, a solution might be around a corner. just say, c u to mia again, if you can. be glad u dont have visual snow, total insomnia, mania, ttts, hypershitusis and headaches to go along with your t.
        Jun 27, 2024
        Utdmad89 likes this.
      2. MiaVIL
        MiaVIL
        @BB23 my tinnitus isn’t somatic, and if it was, I would be more hopeful plus we don’t know when it will be approved, submitted or released. I am sorry you’re going through those other awful health conditions, but my tinnitus is completely unbearable and painful and you really don’t know what all I have been through and go through along with it.
        Jun 27, 2024
    11. MiaVIL
      MiaVIL
      Goodbye Mia. I never wanted to really say goodbye, it was always just “c u later”. Now that I know that there is 0 chance for a recovery
    12. MiaVIL
      MiaVIL
      According to facebook and reddit, NOBODY completely recovers or gets a reduction in T. I only see success stories on here… hmm… fake
      1. View previous comments...
      2. crescentsky
        crescentsky
        I think it can happen. I did recover from my concert-T 10 years ago. Complete silence. Not sure abt my current-demonic-T.
        Jun 25, 2024
        SarahMLFlemmer and gameover like this.
      3. ECP
        ECP
        @kingsfan I agree with you. I think Reddit is a catch-all type of basket full of random people commenting on random topics. The people who are most passionate or most knowledgeable about a topic are usually found at specialty websites devoted to said topic.
        Jun 26, 2024
      4. gameover
        gameover
        Severe T itself is rare, and recovery even more so. But it happens.
        Jun 26, 2024
        SarahMLFlemmer likes this.
    13. MiaVIL
      MiaVIL
      Saw a more specialized audiologist- My middle ear space, including my ear drum need to heal before I can even think of getting relief.
    14. MiaVIL
      MiaVIL
      I am blowing up angry now. All talk no action Shore. RED FLAG- hiding the most important info- FDA approval, coming out, non somatic etc
      1. SilverFox, Juliane and BB23 like this.
    15. MiaVIL
      MiaVIL
      I can’t do it anymore. I have one of the worst cases here. Nothing is improving like I thought. High hiss screeching. I have hearing loss.
      1. Juliane and streifzug like this.
    16. MiaVIL
      MiaVIL
      How do you live with screeching. I just can’t. This is just existing. One sinus infection … one…
      1. Juliane, tpj, Sansa and 1 other person like this.
    17. MiaVIL
      MiaVIL
      So do ppl who get T from viruses or noise have less of a chance of reduction than people who have age related hearing loss and wear HAIDS?
      1. RunningMan
        RunningMan
        Age related hearing loss isn't going to get better until there's a treatment for it. T is more common in older people. And for sudden noise trauma, it seems the younger folks have a better chance of recovery in the short term.
        Jun 10, 2024
        gameover likes this.
      2. MiaVIL
        MiaVIL
        I got mine from an infection at 31. My FIL has age related hearing loss from noise exposure at his job. He wears HAs. He had loud tinnitus and after 1 year with HAs he no longer has it. He can go 2 weeks at a time without his hearing aids and it doesn’t really come back… maybe a small amount but nothing like it was.. then he puts them back in again and it goes away. He goes to all types of loud places too
        Jun 10, 2024
      3. kingsfan
        kingsfan
        My stepfather has tinnitus and hearing loss from riding motorcycles and working on heavy machinery. His tinnitus goes completely away while wearing his hearing aids
        Jun 11, 2024
    18. MiaVIL
      MiaVIL
      Metallic crackling in my right ear. It bounces and dances to a rhythm. I can feel it.
    19. MiaVIL
      MiaVIL
      This will be the end of me.
      1. gameover and Sansa like this.
    20. MiaVIL
      MiaVIL
      I’m going to die
      1. gameover and Utdmad89 like this.
      2. BB23
        BB23
        One day everyone will
        Jun 7, 2024
        gameover likes this.
      3. MiaVIL
        MiaVIL
        I will sooner rather than later
        Jun 7, 2024
        gameover likes this.
    21. MiaVIL
      MiaVIL
      ENT has formally discharged me from her office. No more scans. Says I have fluid in back of ME and that I need psychiatric help.
      1. gameover and Pinhead like this.
      2. View previous comments...
      3. JeffToob
        JeffToob
        What is ME?
        Jun 7, 2024
      4. MiaVIL
        MiaVIL
        Jun 7, 2024
        JeffToob likes this.
      5. gameover
        gameover
        Like WTF? Do you suggest psychiatric help, too when you break a leg?
        Jun 8, 2024
        SilverFox likes this.
    22. MiaVIL
      MiaVIL
      I miss silence, but I also miss the cutest little fleeting T episode I had in R ear today. Thin, 8K didn’t last long enough.Felt good in ear
      1. Thizzle
        Thizzle
        Those are the furthest thing from cute lol
        Jun 4, 2024
      2. MiaVIL
        MiaVIL
        They are when you have my level of T severity.. they are a reprive… plus how they feel in my ear helps the chronic irritation I feel from my ears and current T
        Jun 4, 2024
        Utdmad89 likes this.
    23. MiaVIL
      MiaVIL
      I would rather have pure tone
      1. gameover and weehiru like this.
      2. View previous comments...
      3. MiaVIL
        MiaVIL
        Had the cutest little fleeting T moment in R ear today. So thin, around 8K. Felt good in my ear and he was cute. Wished I had that over what I normally have.
        Jun 4, 2024
      4. gameover
        gameover
        Yes. You have hiss from hell? I have both, and the hiss is worse. Only recently I started suspecting ETD, which nobody has diagnosed me with.
        Jun 4, 2024
      5. MiaVIL
        MiaVIL
        @gameover pls do your research about ETD and get copies of your audiogram to compare. ETD often shows type C tymphs.. the pressure must be way in the negatives.
        Jun 4, 2024
        gameover likes this.
    24. MiaVIL
      MiaVIL
      My CT scan says “BILATERAL MIDDLE EAR DISEASE” and a bunch of other fancy words… soft tissue, opacified cells… don’t know if causing t
      1. gameover likes this.
      2. View previous comments...
      3. gameover
        gameover
        These ENTs are useless. Entirely Not Treating.
        Jun 4, 2024
      4. kingsfan
        kingsfan
        @MiaVIL Your best bet is to try and see a doctor who is willing to go over it with you.
        Jun 4, 2024
      5. MiaVIL
        MiaVIL
        @kingsfan I live in Canada where I cannot get a second opinion. I am going back to my doctor on Thurs after demanding an appt.
        Jun 4, 2024
        gameover likes this.
    25. Daniel Lion
      Daniel Lion
      Lovr and prayers coming at you right now
      1. MiaVIL
        MiaVIL
        Thank you, back at you
        Jun 1, 2024
        Daniel Lion likes this.
    26. MiaVIL
      MiaVIL
      I need help
      1. Juliane likes this.
    27. MiaVIL
      MiaVIL
      Worsening. I thought I was getting better… it was barely noticeable a couple days last week now its been horrible this week. I want to die.
      1. gameover and Sansa like this.
      2. View previous comments...
      3. MiaVIL
        MiaVIL
        @RunningMan I doubt it. My CT scan shows “middle ear disease”. I have no idea what to do… I get screaching. I thought I was healing.
        May 31, 2024
        gameover likes this.
      4. gameover
        gameover
        You have a way to kill this shit. Look for better doctor now!!!
        Jun 4, 2024
      5. MiaVIL
        MiaVIL
        @gameover I’m trying but I don’t what is wrong with me. Hopefully I get some answers within the next 2 weeks. How do I even know that ME disease causes this much T?
        Jun 4, 2024
        gameover likes this.
    28. MiaVIL
      MiaVIL
      Is there anyone with good medical jargon knowledge that can read my CT scan from last December? doc mailed it to me
      1. MiaVIL
        May 26, 2024
      2. Nick47
        Nick47
        Your dr can read it surely?
        May 27, 2024
      3. MiaVIL
        MiaVIL
        My ENT won’t see me anymore
        May 27, 2024
    29. MiaVIL
      MiaVIL
      WHY ISN’T THE FADING LINEAR? it was a whisper for a few days last week… now more intense!
      1. Kiyomi likes this.
    30. MiaVIL
      MiaVIL
      Everything is mostly silent except for the high hiss which comes and goes like a sharp knife. I need it to get softer.
      1. Ngo13, Sansa, streifzug and 1 other person like this.
      2. View previous comments...
      3. MiaVIL
        MiaVIL
        @SumGuy I don’t have ringing. My problem is sharp hissing/ticks and crackles
        May 26, 2024
        gameover likes this.
      4. Juliane
        Juliane
        Everything is mostly silent? That's incredibly good news!
        May 26, 2024
        gameover likes this.
      5. MiaVIL
        MiaVIL
        @Juliane its not gone. I have painful hissing/crackles/ticks
        May 26, 2024
        gameover likes this.
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  • About

    Gender:
    Female
    Location:
    Underworld
    Tinnitus Since:
    05/2023
    Cause of Tinnitus:
    infection, hearing loss
    The greatest wealth in the world is health. Nothing else matters.